About KrabbeConnect
Founders, Stacy Pike-Langenfeld and Anne Rugari, formed KrabbeConnect, a 501 (c)(3) in 2017, to bridge the gap between Krabbe disease science and patient knowledge.
The idea for KrabbeConnect originated from the 2015 Family Centered-Krabbe Translational Research Network meeting (FC-KTRN), a collaborative meeting between researchers and families to aid in solving the uncertainties of Krabbe disease. Through KrabbeConnect, the foundation provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.
Learn More about KrabbeConnect
KrabbeConnect’s dedication and efforts will advance research, provide family support, enhance education, and raise awareness, one step at a time. The organization will encourage patients, caregivers, medical scientists, clinicians, industry, and the government to work together quickly to assure a better life for patients. KrabbeConnect believes advances are made when we align ourselves with the same goal, improving the quality of life of those diagnosed with Krabbe disease.
We encourage you to learn more about us by understanding our Mission, Vision, and Multi-Center Approach here. If you have questions or want to connect with us, please Contact Us. We would love to hear from you!
We can’t wait to gather again for the KrabbeConnect Family Warrior Meeting on June 26–27, 2026 at the Hilton Chicago/Oakbrook Resort.
We know travel and lodging costs can be a barrier for many families. Because connection, learning, and support matter, details about our family scholarship program to help offset costs will be available by the end of March (or sooner).
At KrabbeConnect, we are committed to making sure families impacted by Krabbe disease have the opportunity to:
💙 Connect with other families who understand
💙 Learn from experts and one another
💙 Share experiences, resources, and hope
Stay tuned for scholarship information and registration details soon. We hope to see you there. 💙 ... See MoreSee Less
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We want to extend our heartfelt thanks to Kevin Cushman and Judy for sharing their story and continuing to fight for families impacted by Krabbe disease. 💙
Their powerful advocacy — including more than a decade of persistence after losing their son Collin — helped move Wisconsin forward in adding Krabbe disease to newborn screening, ensuring more babies will have the chance at early detection and treatment.
Because of families like the Cushmans, progress happens. Because of their courage, more children will have hope.
We are grateful to stand alongside you and honor Collin’s legacy as we continue working together to #CureKrabbe.
🎥 Watch the story here: ... See MoreSee Less
Wisconsin to start testing Krabbe Disease
www.wsaw.com
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For more than 17 years, Tammy has been a steady thread in the Krabbe community. 💙 She’s a mom of five — two of her boys were diagnosed with Krabbe disease.
Marshall was diagnosed when the family learned they were expecting Michael. Marshall, who passed away in 2016, just four months shy of his 7th birthday, saved his younger brother.
Because of their journey, March encompasses life and loss for their family.
In honor of Marshall — and for Michael and every family facing Krabbe — Tammy is giving back through a fundraiser to support families who understand just how hard and unpredictable this disease can be. While Michael is doing well, there is still no cure, and no one knows what the future holds.
Let’s surround Tammy and her family with the same love they’ve given this community for so many years.
💙 Give in honor of Marshall & Michael (M&M).
💙 Share to spread awareness.
💙 Stand with families facing Krabbe.
#CureKrabbe #KrabbeConnect #RareDiseaseCommunity
Click to donate to Tammy Wilson Facebook fundraiser here -
www.facebook.com/share/p/183N39ZZbw/ ... See MoreSee Less
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🚨 HALF-OFF ALERT — Let’s Fill the Course 💙
We’re heading into the final stretch for Putt-Putt to #CureKrabbe, and we want YOU there.
For a limited time, we’re offering 50% OFF registration to help bring more people together for a fun night that truly makes a difference.
⛳ Mini golf
💙 Families impacted by Krabbe disease
🎁 Auction + prizes
✨ A night of purpose, connection, and community
Every registration helps fund research, family support, and the programs we’re building together at KrabbeConnect.
Grab your team, shake off the cabin fever, and come putt for a cause.
👉 Register now: krabbeconnect.org/kcevent/putt-putt-to-curekrabbe/
Enter promo code [half] to receive 50% off ... See MoreSee Less
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For many, Monday means back to routine after a weekend of rest.
But for families caring for a loved one impacted by Krabbe disease, weekends don’t always look different from weekdays. The medications still need to be given. The therapies still need to happen. The equipment still needs managing. The monitoring never really pauses.
At KrabbeConnect, we see you.
And while your Monday may look different than most — please know this:
We keep working for you.
We advocate for you.
We push for newborn screening.
We support research.
We build programs to ease the burden where we can.
We are with you — today and every day.
#curekrabbe #krabbeconnect #KrabbeDisease ... See MoreSee Less
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Saturday, February 28 is Rare Disease Day.
Bentley’s transplant gives him more years — but Krabbe still needs a cure.
Funding rare disease research is hard.
Help us change that.
Share. Donate. Learn. 💙 ... See MoreSee Less
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